Michelle Forney

Michelle Forney

Symptoms started presenting themselves in January 2015 when I experienced pain and an intense onset of itching of the right breast until I would break my skin forming rashes and blisters. With these symptoms I met with my primary care physician, who also brought in a dermatologist to see me. They immediately put me on prednisone for what they diagnosed as shingles. They took a small culture and sent it in, within a few days it came back negative for shingles but the doctor continued me on prednisone since there was no relief. Due to no relief, I continued to schedule appointments with my primary care physician and she than put me on Zoviarx for a “year” to suppress any virus I may have. Sometime in 2016 my breast started to swell up and go down, approximately 30% larger than my left breast. In 2016 I had two mammograms and nothing was noted. November 2016 I presented my symptoms to my plastic surgeon who never mentioned BIA-ALCL to me, but diagnosed me has having a low grade capsular contracture and provided me a fee schedule to remove the implants and replace them. Financially this was not an option for me at the time.

I went through 2017 with the same symptoms and just treating them with home remedies. In December 2017 my breast doubled in size. This time, I avoided my plastic surgeon and my primary care, I decided to go to my OB-GYN, I thought maybe she would see something. My OB-GYN did not mention anything to me about BIA-ALCL, she contacted a breast specialist who examined me and stated I had a breast infection (mastitis). I had no fever, no drainage and my breast was not hot to the touch, no ultrasound and no other tests were performed. They placed me on an antibiotics and told me to see if it cleared up in 10 days. With no relief, but more pain, I returned 10 days later and asked for an ultrasound. They finally sent me for a mammogram and ultrasound at that time. The radiologist identified a seroma around my implant and said she had never seen that before. My insurance was changing in 3 days on January 1, 2018 so my anxiety was high and I knew I needed to find a surgeon right away, because at this time I became aware of BIA-ALCL.

I was lucky to have connections and got into a new breast surgeon in San Francisco on January 2, 2018, which was only a delay of 5 days. The breast surgeon performed a fine needle aspiration and aspirated 120cc of clear, thin, yellow fluid. Fluid was sent for cultures, cytology, and for flow cytometry.

My testing came back came back “No evidence of Breast Implant Associated Anaplastic Large Cell Lymphoma”.

Although it came back negative I was still referred back to plastic surgery.

Michelle’s capsule with the masses.

I met with a plastic surgeon and he spoke to me about BIA-ALCL and wanted to perform a capsulotomy on my right breast, send my tissue for testing to rule out BIA-ALCL and replace both my breasts with new implants two weeks following.

My surgery was scheduled for the following week, on January 18, 2018.

On January 28, 2018 my tissue tests came back positive for Breast Implant Associated Anaplastic Large Cell Lymphoma. At that time my plastic surgeon spoke to me about my capsule and the masses he saw which were encapsulated into my capsule, as well as my next steps for oncology.

After reviewing my fluid test we found an error made by the pathology lab. Although 120cc of fluid was aspirated only 10ml were tested, resulting in a negative result (30-50ml should have been tested). We are seeing this pathology error made over and over again, against the NCCN Guidelines.

If I would have made the decision to not have my capsulotomy, I would possibly not be alive today or at a very late stage of ALCL. The decision I made with my doctor, despite the negative fluid test and errors made at the lab, I was staged at 2A.

I am now being treated at MD Anderson Cancer Center in Houston, Texas, I reside in California. Traveling there every 3 months for PET/CT scans, tests and appointments for two years. On a wait and watch.